EU Data Protection: Day of Action on Health and Science Data in Brussels
16 June 2015 - 16 June 2015
Belgium
Brussels, 21 April 2015: The EU is currently preparing a regulation on personal data protection to harmonise data protection laws across the EU and adapt the rules to the new challenges brought by globalisation and new technologies. The Commission’s proposed General Data Protection Regulation aims to enhance the rights of data subjects through greater control of their data, more transparency, and greater enforcement of European data protection rules. The European Parliament adopted its amendments on 12 March 2014, and the Council’s Common Position is pending.
In the view of a number of key organisations, such as Biobanking and BioMolecular resources Research Infrastructure – European Research Infrastructure Consortium (BBMRI-ERIC), Wellcome Trust, Cancer Research UK, European Platform for Patients’ Organisations, Science and Industry (EPPOSI), Consortium of European Social Science Data Archives (CESSDA), European Federation of Pharmaceutical Industries and Associations (EFPIA), and Eurocan Platform amongst others, the legislation will have important implications for the use of data in health and scientific research. Harmonisation of data protection laws across the EU would facilitate research between member states, but there are aspects of the regulation and proposed amendments which could put some valuable research at risk.
Consequently, a day of action entitled ‘Data for Health and Science’, led by BBMRI-ERIC, is being organised and will take place in Brussels on 16 June 2015. The Day of Action aims to sensitise EU policy-makers to the manner in which scientific research is currently conducted and to invite them to consider the possible unintended impacts of the General Data Protection Regulation on the research and innovation landscape in the European Union and the potential impacts on European research infrastructures as well as transnational research collaborations.
The Day of Action will consist of a series of meetings between the participating organisations and EU policy-makers and will include a seminar at the Stockholm Region EU Office, where case studies will be presented to show how data is used in research today and why it is important to allow re-use of data for research purposes. In addition, speakers will propose solutions, on behalf of their organisations, which aim to ensure personal data protection without inhibiting research and explain how this can be achieved. The participating organisations will use the seminar to explain the forms of consent used in research as well as the ethical and technical measures which already exist to protect the privacy of data subjects and prevent unlawful re-identification.
On 12-13 March 2015, Justice Ministers in the Council meeting reached a partial general approach on chapter II of the General Data Protection Regulation, which is more favourable to research than some of the European Parliament’s amendments. After the Council adopts its Common Position, the trialogue will likely begin in the summer of 2015. Trialogues are meetings attended by representatives of the European Parliament, the Council and the Commission with the purpose of reaching an agreement on a package of amendments. The Council aims to adopt its overall position at the next Justice and Home Affairs Council meeting on 15-16 June.
Additional information on the seminar is available at:
http://www.iscintelligence.com/event.php?id=262(opens in new window)
In the view of a number of key organisations, such as Biobanking and BioMolecular resources Research Infrastructure – European Research Infrastructure Consortium (BBMRI-ERIC), Wellcome Trust, Cancer Research UK, European Platform for Patients’ Organisations, Science and Industry (EPPOSI), Consortium of European Social Science Data Archives (CESSDA), European Federation of Pharmaceutical Industries and Associations (EFPIA), and Eurocan Platform amongst others, the legislation will have important implications for the use of data in health and scientific research. Harmonisation of data protection laws across the EU would facilitate research between member states, but there are aspects of the regulation and proposed amendments which could put some valuable research at risk.
Consequently, a day of action entitled ‘Data for Health and Science’, led by BBMRI-ERIC, is being organised and will take place in Brussels on 16 June 2015. The Day of Action aims to sensitise EU policy-makers to the manner in which scientific research is currently conducted and to invite them to consider the possible unintended impacts of the General Data Protection Regulation on the research and innovation landscape in the European Union and the potential impacts on European research infrastructures as well as transnational research collaborations.
The Day of Action will consist of a series of meetings between the participating organisations and EU policy-makers and will include a seminar at the Stockholm Region EU Office, where case studies will be presented to show how data is used in research today and why it is important to allow re-use of data for research purposes. In addition, speakers will propose solutions, on behalf of their organisations, which aim to ensure personal data protection without inhibiting research and explain how this can be achieved. The participating organisations will use the seminar to explain the forms of consent used in research as well as the ethical and technical measures which already exist to protect the privacy of data subjects and prevent unlawful re-identification.
On 12-13 March 2015, Justice Ministers in the Council meeting reached a partial general approach on chapter II of the General Data Protection Regulation, which is more favourable to research than some of the European Parliament’s amendments. After the Council adopts its Common Position, the trialogue will likely begin in the summer of 2015. Trialogues are meetings attended by representatives of the European Parliament, the Council and the Commission with the purpose of reaching an agreement on a package of amendments. The Council aims to adopt its overall position at the next Justice and Home Affairs Council meeting on 15-16 June.
Additional information on the seminar is available at:
http://www.iscintelligence.com/event.php?id=262(opens in new window)